I am going for it

Discuss stem cells, adult and embryonic, and their therapeutic potential for MS here.

Postby carolew » Tue Aug 04, 2009 6:39 am

Thank you very much for the words of encouragement.
I am now back home. Sitting down for so many hours on the way back has made me very stiff. (plane and bus)
I am still very happy that everything is done.
I have to restart my exercise program slowly and look up for more information on all the types of physiotherapy that they are recommending (Feldenkreist, etc. )

Then, I will be anxious to see any change. So far, nothing new of course, it is too early.
take care all, Carole
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Postby Needled » Tue Aug 04, 2009 6:58 am

Wow, Carol, very exciting stuff! I so hope it all goes well and will be looking forward to your updates.
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Postby indigoinmotion » Tue Aug 04, 2009 2:15 pm

Welcome home, Carol. You deserve some R & R. Keep us posted!
Sending Happy Thoughts and Best Wishes! Indigo
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Postby Lyon » Tue Aug 04, 2009 2:47 pm

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Postby BEZALEL » Tue Aug 04, 2009 2:55 pm

carolew wrote:
Mark's friend on another site, is doing quite well after going to Israel for a similar procedure.


Hi Carol, I hope you are doing well, and wish you all the best. Would like to hear how you are doing, and it works for you.

You mentioned Mark's friend did it in Israel, is that by any chance the lady from canada, who did it last year in Jerusalem in the Hadassah Hospital, and she is supposed to play better golf than before. I try to find out more, how she is doing but I guess this is still on trial, I know this summer in England and Italy, where 2 more trials, with once own stem cell and embrionic.......anyone heard abt. this. below is the article from the Hadassah Hospital:

Hadassah Hospital: Issue 2009

Medicine:
Back on Course
By Wendy Elliman


Debbi CooperThe success of a therapy using adult stem cells to treat multiple sclerosis at Hadassah is encouraging news for those who suffer from MS and other neurological disorders..

In 2007, Canadian golf pro Louise Zylstra was given the grim diagnosis that she had multiple sclerosis. By early 2008, she was not only unable to play 18 holes, she could scarcely walk 50 yards. Her doctor in Ottawa told her she would likely be in a wheelchair within two years.

“It was a disaster,” Zylstra told Canada’s CTV National News. “When you think you might not play golf again and that’s what you do....” She was speaking in mid-November 2008, soon after returning to Canada from eight months of treatment at the Hadassah–Hebrew University Medical Center in Israel. Not only is she walking easily again, she is back on the golf course. “It’s night and day,” she told CTV. “It’s a complete 180-degree turn from where I was.”

Neurologist and multiple sclerosis specialist Dr. Mark Freedman of the Ottawa Hospital, who had diagnosed Zylstra and told her there was no cure for her illness, acknowledged to CTV that she had “recovered substantial function very quickly…. She’s out golfing, and out-golfing most people, which is quite incredible.”

Zylstra is one of 35 people to undergo the world’s first adult stem cell therapy. “Until recently, stem cell therapy was a theoretical treatment, still more science fiction than fact,” says Dr. Dimitrios Karussis, neurologist and neuroimmunologist in Hadassah’s neurology department. “The trial in which Louise Zylstra took part is the first time that adult stem cells have ever been clinically transplanted anywhere in the Western world.”

The results of this transplant are so exciting that representatives of major medical centers from Europe and North America are meeting in London in the next few months to discuss the Hadassah protocol directly with Dr. Karussis and his collaborators—Hadassah neurology head Dr. Tamir Ben-Hur, former Hadassah bone marrow transplantation head Dr. Shimon Slavin, Hebrew University of Jerusalem biophysicist Dr. Adi Vaknin and Dr. Celementine Karageorgiou, an associate at the Neurological Center of the G. Gennimatas General Hospital in Athens.

“We’re planning to set up an international multicenter Phase 2 trial of this treatment with adult stem cells, to examine it further, improve it and hopefully make it more effective,” says Dr. Karussis.

This is encouraging news not only for the tens of thousands worldwide struggling daily with MS but also, potentially, for the many more afflicted with other devastating neurological disorders—among them amyotrophic lateral sclerosis (Lou Gehrig’s disease), Parkinson’s disease, Alzheimer’s disease, stroke and spine injuries.

Multiple sclerosis was, however, the first focus for Dr. Karussis. Born in Salonika, Greece, he has lived in Israel since 1988, researched bone marrow stem cells since 1990 and now heads Hadassah’s Multiple Sclerosis Center.

“Our department at Hadassah is one of the leading stem cell research centers in the world,” he says. “It made sense to combine my research with my clinical experience....”

The Hadassah center treats about a third of the thousands of Israelis battling the autoimmune inflammatory disease of the central nervous system. Most were diagnosed before age 40.

“MS is the commonest cause of neurological disability in young adults, occurring in about one in 2,000 people,” explains Dr. Karussis. “It’s more frequent in countries further from the equator and, in Jewish populations, is found more often in Ashkenazim than Sefardim, at a rate of three to one.”

In MS, the patient’s immune system goes rogue and attacks the fatty white myelin sheath that insulates the neurons or nerve cells. The result is functional deficiencies in vision as well as in the sensory, motor, balance and sphincteral areas.

While doctors know a great deal about the mechanisms of the disease process, its cause or causes have yet to be found. Medications that ease symptoms, return function and prevent new attacks help some patients, but in others are ineffective or produce adverse effects. Until, perhaps, now.

“We’re exploring how stem cells can be used to regulate or reprogram the malfunctioning immune-system cells that destroy myelin and perhaps even to enhance regeneration of both myelin and neuroprotective mechanisms,” says Dr. Karussis. “What’s new is that we’re using the patient’s own stem cells to do so.”

It was only recently that researchers at Hadassah and major medical centers in the United States and Europe discovered that each of us carries small reserves of a different type of stem cell, one known as mesenchymal. These are flexible young cells, as yet uncommitted to turning into the many different types of human tissue—but, importantly, with the potential to do so.

Until this discovery, the only adult stem cells to be therapeutically exploited were blood-forming or hematopoietic stem cells. Generally provided by matched donors, they have been used in bone marrow transplantation for over 30 years to repopulate blood. Other than this, however, cell therapy research has focused on the ethical minefield of stem cells from embryos.

The adult mesenchymal cells, however, have several important advantages over the embryonic kind, as the Hadassah team learned. First, because they are harvested from the patient, there are neither ethical issues to limit their use nor rejection problems, making treatment safer. Second, there is little danger of this type of cell turning malignant after transplantation. And third, they can be cultured and expanded easily: within two months, a purified population of up to 100 million adult stem cells can be produced from a single patient.

A further plus is that these reserves of adult stem cells have turned out to be more plentiful than once thought. Scientists have found small quantities of them (roughly one stem cell per million cells of tissue) in brain, bone marrow, peripheral blood, blood vessels, skeletal muscle, skin and liver. Their probable function: repair of damaged tissue.

“You may question, as we did, why we need to graft these cells if they already exist in the body,” says Dr. Karussis. “We don’t have a firm answer, but it could be their small numbers limit their ability to migrate to damaged areas, or they don’t receive the signals to migrate.”

Whatever the reason, Hadassah physicians decided to give nature a hand and move these healing cells to where they were needed. In mid-2006, Drs. Karussis and Slavin launched the world’s first clinical trial with adult mesenchymal stem cells.

“Seven years of research in animal models of MS and in the lab with human tissue, together with Hadassah’s clinical bone-building and bone marrow transplantation programs, convinced us that a clinical trial was both safe and justified,” says Dr. Karussis. “We examined two very disabling conditions in this trial: multiple sclerosis and amyotrophic lateral sclerosis. The former is an inflammatory disease in which neurodegeneration is secondary, resulting from the inflammation. In the latter, degeneration of central nervous system cells is the primary pathogenic [disease] process.”

During the two and a half years that followed, 15 patients with MS and 20 with ALS joined the study, over half from outside Israel. “There’s no effective treatment for either ALS or the progressive phases of MS,” says Dr. Karussis. “When patients, such as Louise Zylstra, heard about the trial, they were anxious to be included.”

In this Phase 1 study, 35 were dosed with their own stem cells. Some 25 million cells were administered to each intravenously and another 60 million by lumbar puncture, directly into the spinal fluid.

“Our aim was to see whether therapy was feasible and that it caused no harm,” says Dr. Karussis. “Both were demonstrated. The sole side effects were mild headache and a three-day fever.”

Although evaluating efficacy was not a study aim, the investigators naturally made preliminary clinical observations. And it’s these, combined with the protocol’s feasibility and safety, that have excited the medical world.

“In the trial, the cells showed special properties,” says Dr. Karussis. “They reduced the destructive inflammatory process and so prevented further injury, and they also appeared to promote recovery processes in the brain.”

In practical terms, the stem cells stabilized the neurological condition of the ALS patients. Among the MS patients, some, like Zylstra, showed an impressive response, recording an improvement of about one degree in their functional score. Among the very severe and chronic MS patients, however, there was no such response—perhaps because years of degeneration have created damage beyond repair.

The Hadassah researchers have planned two further clinical trials. One is the extensive multicenter Phase 2 trial to be set up at the London meeting. “One modification we’ll suggest is multiple injections of stem cells, as there were indications that efficacy decreased over time,” says Dr. Karussis.

Another is testing other types of stem cells. “Experience gained in this first clinical trial with adult mesenchymal stem cells is providing a critically needed platform to advance our work with different types of stem cells currently in the development pipeline,” adds Dr. Ben-Hur.
For the past eight years, Dr. Ben-Hur has been working with Dr. Benjamin Reubinoff, director of Hadassah’s Human Embryonic Stem-Cell Research Center, to develop the use of neuronal precursor cells (infant nerve cells) derived from human embryonic stem cells. They are planning a clinical trial, substituting these neuronal cells for the mesenchymal cells used in Dr. Karussis’s trial.

“We’re excited, but we’re realistic,” says Dr. Karussis. “We still have a lot to learn. We’re working with the building blocks for all human tissue, and I don’t think any of us would care to predict, at this stage, how far this may take us.” H

I hope this will be a cure, and help to all.......
and back to normal life.....
:)
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Postby carolew » Wed Aug 05, 2009 6:59 am

No, Mark's friend is on another site called Ms world. He is doing very well. Minor improvements now but it was just done.
The neurosurgeon there told me that France is also doing a study and will publish soon.
I am restarting my physio now and will keep you posted. Thanks,
Carole.
PS, Thanks for your kind words of encouragement all.
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Postby mtf » Sat Aug 22, 2009 10:26 am

How are you Carol? I ha ve done the same treatment in Dusseldorf that you have done. After 3 weeks all I can say is that my bladder is better. Teresa
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Postby BEZALEL » Sat Aug 22, 2009 3:47 pm

Hi,

I looked at the x-cell center website and came across this:

http://www.xcell-center.com/treatments/ ... rosis.aspx
with this paragraph:

"Currently there is no cure for MS. There are treatments available that may slow its progression and alleviate associated symptoms. Stem cell therapy is among these treatment options." :o

I grew up in germany, they are very open minded with all not like here in the states. so they mention, it is still a therapy and not a cure.

but i would want to know how you are coming along. and it will take some time before we now for sure that this will be cure from all the trials that are being done, hopefully for us and any other disease out. :)
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Postby mtf » Sun Aug 23, 2009 4:51 am

I have MS since 1989 and Live in Lisbon Portugal. For the last 9 years my MS have progressed to SPMS and I’m now in a wheelchair. My main problems are fatigue and spasticity.

I went to Dusseldorf in Germany and I have done on 27.07.09 the collection of 20 tubes of my own bone marrow (200ml). After that they have sent it to the lab for analysis and stem cells treatment. On 29.07.09, 5,5 ml containing 5 250 000 (vitality 92,3%) autologous stem cells were implanted via lumbar puncture.
I had strong back and head pain.
As the Portuguese and German Doctors said I can have improvements in 4 or 5 weeks (or not). The stem cells need some weeks to do their “work”. Meanwhile I have to train my motorneurons to work again (therapy).
People with less time of MS have more improvements then people with longer time of MS (my case).
After 3 weeks, what I can say is that my fatigue and my bladder are a little better.
I'll try anything (that's looks reasonable) to stop my MS.
Teresa
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Postby carolew » Sun Aug 23, 2009 6:50 am

Dear Teresa, we were there at almost the exact same time!
I am glad you tried it cause they sure don't have much to offer when you are SPMS. So far, I have only noticed that my foot drop is slightly less pronounced which means I trip less often when I walk. I hope I continue to improve. It is only 3 and a half weeks since the procedure.
Hope you will continue to improve as well...take care Carole
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Postby Sharon » Sun Aug 23, 2009 7:14 am

Carol...have you noticed any other improvements i.e. fatigue, or brain fog? I noticed in one of your posts tht you are including Feldenkrais in your physiotherapy. What do you think about it? I also take Feldenkrais classes...at first I thought it was not going to be helpful, but now I realize that I am paying attention to my body and "what it is saying" to me. Some of the movements are not easy with the foot drop, so we modify them a bit. The hamstring stretches are particularly helpful.

Glad to hear you are doing well.
Sharon
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Postby carolew » Mon Aug 24, 2009 4:05 am

Dear Sharon.. nothing else so far. I did not have the fatigue nor the brain fog but I am looking forward to more improvement. Will keep you posted.
As for the Feldenkrais, I do it on my own (it's not the same), I am still working and in Germany, they sais that ADL'S are also a good exercise...lol
Will add on as things happen.. take care , Carole
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Postby BEZALEL » Mon Aug 24, 2009 7:30 am

carol and teresa,

this sound like good news, patients is the key as well......i am thinking of you too and want to know how you are doing and improving.

i was diagnosed last year october, sofar don't need a cane, do a lot of yoga (what i can with modification), tai chi, and the pool, and seeing a pt for my left foot/leg......there is a pill for strength coming out next year, will try that......

am hoping to not get worse, but if, i will want to do the stem cell as well....

keep on fighting.....
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Postby mtf » Mon Aug 24, 2009 11:50 am

Well ... What ever you do, do it now. As I can see any treatment is better in the beginning of MS.
I have MS since 1989 and during the st 10 years I was ok, but not now. I'm progressing (SPMS). Sofar no improvements....

Teresa
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Postby BEZALEL » Sat Aug 29, 2009 5:26 pm

i will see my neuro in mid sept., will ask him than, but if i do it, most likely at hadassah hospital in jerusalem....did you start taken in '89 shots of whichever medication, i am on rebif, and sofar doing fine with it....
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